'When you hear hoofbeats, think of horses not zebras' - the old adage is well-known to GPs but what should you do when faced with a zebra, not a horse? Consultant cardiologist Professor Robert Tulloh and GP Dr Louise Tulloh kick off our new series with their advice on how to catch Kawasaki disease in general practice.

NHS England to begin extracting data from GP records

NHS England will begin taking data from GP records in a ‘small number of practices’ in the upcoming months, in order to pilot their new data extraction system before a wider rollout later in the year.

NHS England said they agreed to run the pilots of the GPES system after a meeting with the Information Commissioner’s Office (ICO) earlier this month.

They could not confirm how the practices will be selected, if the data will be de-identified or identifiable or which read codes will be extracted. When asked by Pulse, they also could not confirm if patients are able to opt out of these extractions.

An NHS England spokesperson said: ‘A meeting was held between NHS England and the ICO, which we requested some time ago. This was a routine meeting and forms part of regular engagement between our organisations where we update the ICO on our plans and seek their advice.

‘A number of items were discussed with the ICO in what was a positive meeting and we are now working through the detail, including agreement to begin the data extraction process with a small number of practices, as planned, before wider rollout later this year.

‘We very much look forward to continuing our helpful discussions with both the ICO and other key stakeholders around plans for the safe delivery of the programme and we will be happy to update you as further details are confirmed.’

The ICO said after a meeting with NHS England in mid May, they were reassured that the extracts would comply with the Data Protection Act.

‘We will continue to work with NHS England to ensure that they remain on course to comply with the requirements of the Act’ they said.

Mr Phil Booth of campaign group MedConfidential said it was concerning that NHS England could not confirm whether patients will be able to opt out during the pilots. He said: ‘Patient opt out is not an optional extra. Extracting data from GP records without first telling everyone affected and allowing them to opt out will not only put patient privacy and safety at risk - it’ll break Jeremy Hunt’s unambiguous promise to respect patients’ wishes. If even the Secretary of State can’t get NHS England officials to stick to what’s been promised, what chance have patients?’

During the campaign that No2ID ran under the last government, large numbers of people opted out of the SCR, and many used a letter drafted by FIPR in which the patient said they opted out of central data collection to the maximum extent permitted by law. Kelsey may have decided to ignore this, but the result is that the GP's neck is on the block. If you upload the data of any patient who opted out in these terms, then you're infringing their human rights as well as committing a clear ethical breach. The simplest way to deal with this is to go through your practice database and for every patient with the 93C3 SCR opt-out code, add the new 9Nu0 / XaZ89 GEPS dissent code. The only ethical alternative is to go through the whole correspondence file with each of these patients, analyse what they said carefully, and call them if there's any doubt.

Typical of Hunt / Kelsey to dump the risks on patients and the costs on GPs